Tuesday, February 19, 2013

Carpenter's First Year

I sat up late last night, unable to sleep, and decided to put together a little memorial for my sweet boy.  Tomorrow, I'll write.  Today, I'll let pictures speak for me.  Goodnight, dear friends.

video

Monday, February 18, 2013

I'm Not Ready

Tomorrow is Carpenter's birthday.  I have written and rewritten this post almost five times today.  And I still feel just as disjointed and confused as with the first draft.  This probably makes no sense, but I believe that posting as-is will be honest.  And I prefer to be honest about what's going on in my heart and mind through this process.  Because not one minute of this journey has made sense.


I drove home from a meeting tonight.  It was dark.  The radio had been left on NPR and it was pretty quiet.  And it totally hit me how alone I was.  I called Mike to let him know I was on my way.  He didn't answer.  I realized that people I had called earlier in the day had not called me back.  I called a few other friends.  None answered.  I called Mike three more times.  He did not answer.  So I started to panic.  The grief finally had a crack to slip through, and it did.  Of course, Mike and a friend both called me, and I got a text pretty quickly, but the seed had already been sown.  And I knew finally what my big issue had been all day long.

This is the loneliest I've felt in a year.  

You imagine your child's birthday as a grand celebration where you're surrounded by family and friends.  People come from all around to see the person-of-the-hour, bringing gifts, hugs and kisses.  Everyone wants a slice of cake.  Everyone wants a picture with the birthday baby.  Everyone.  

Unless the birthday boy died.  Then...well, the invite list is pretty short, and not because you're feeling selective.  The number of people willing to celebrate the 24-week-life of my son is pretty damned small.  And that pisses me off.  

I am pissed off.

Because people SHOULD care.  People should remember.  How is this not seen as one of the greatest tragedies in the world that such a handsome little boy is no longer among us?  Where is the uproar?  Where are the memorials, the remembrances, the throngs of mourning fans?  

Right here.  Sitting on our bed in our bedroom.  

I came in the door sobbing, demanding to know why the nation would fly the flag at half-mast for Whitney Houston when she overdosed after a long, exciting life, but only an intimate few recognize Carpenter's anniversary.  I stood defiant, willing Mike to hug me and cry injustice as well.  Instead, he cut right through all of it.  

He said, "I guess we're luckier than a lot of people."

And he's right.  Carpenter does have friends and family who will remember him tomorrow.  Some will mourn with us.  We will not be alone. 

So while I still rage against the injustice of a dear life oft overlooked, I will try and appreciate how lucky we are.  And I pray that those who make us feel that way know how much they mean to us.  Because without those select few, I would have drowned in this sea of grief a year ago.  

I'm off to tread water.  Or cry myself to sleep.  Goodnight, dear friends.

Tuesday, February 12, 2013

3 Hour Glucola with Gifs

Well, I had always hoped I wouldn't be here.  Sitting in a quiet room for three hours while nurses randomly stick me with needles.  


I'm having a Clockwork Orange flashback.  
Not going to hurt at all, they said.

If you've gotten this far in our relationship, you've probably realized needles and I have a torrid love-hate relationship.  I hate, hate, hate them, but they pretty much keep my kids alive.  So.  Yeah.  Shut up with the whining...right?  Wrong.  

I thought, if I have to go through this, I'm taking someone down with me.  And why not the millions (dozens...handful) of people who read this blog?  So, as I sit here, waiting for the next vial to be siphoned off, I will chronicle my experience.  For science.  

Seems legit.


7:45 AM

I was told to arrive "by eight am."  Being chronically early for appointments means I was here at 7:45, ready to go.  Of course, no one else was.  I stood outside the office in what can only be described as the atrium to a small-town mall, complete with exotic plants in ugly planters and tile leftover from a hospital.  I know now they tell you to get there by eight am because they have every intention of leaving you in the hallway.  Part of the fasting beforehand is watching a few dozen nurses walk by with McDonald's bags and Starbucks cups.  If you keep from tackling a slow one and licking the leftover wrappers, you've passed step one. 

OH...that counts?


8:00 AM
The nice nurse/receptionist checked me in.  I was obviously the first one here, so there was no fooling around, luckily.  I've got other doctors appointments today, because I'm high-maintenance like that.  She had me sign some papers, and then sent me down a hall to a little room with a single blood-draw chair facing a mirror.  Fun.  That's what every pregnant girl wants first thing in the morning when she's crabby and underfed.  To stare at herself head-on under fluorescent lights.  But I'm a fainter, so I got upgraded.

They were duly impressed.


They moved me to a nicer room, which looks like a really comfy waiting room for one, I guess.  I rolled up my sleeve, and started to warn my nurse that I'm scared to death of needl---holy crap she skewered me.  She's like a vampire-ninja.  Snuck right up, wasted no time, and stabbed me.  I guess it's over, at least.  

Then I got to choose what flavor pain I wanted next.  Your choices are normally Fruit Punch or Orange.  I had Fruit Punch for the one-hour, so I figured I'd mix it up.  Too much of a good thing, you know?  The Fruit Punch tastes like Hawaiian Punch thickened by hummingbird food.  The Orange was not nearly as sweet, thankfully, but just as thick.  I'll be brushing my teeth for an hour just to feel normal again.  (Have I ever mentioned I'm in love with brushing my teeth?  Nevermind.)  So, you have five minutes to chug down the juice.  It's not horrible at first.  It's really the dregs at the bottom that'll kill you.  You can see how thick it is then.  But I chugged it, tossed it, and laid back for the next three hours of medically-induced sugar-high.


Absolutely no side effects.


8:15 AM
HOLY CRAP I JUST REALIZED WHERE I AM!  I was just sitting here, thinking how delightfully cushy the fainters have it in comparison to the rest, and it hit me.  Wait for it...you have to stumble on it like I did.  I'm in a room with a heavy door toting a sign that warns "Do not enter, procedure in progress."  The room has two very comfy 80's recliners, a table, and a tv.  I can adjust the lighting however I please with lamps and warmer overhead light.  So, I'm sitting here, in the recliner, with a trash can beside me, a table with tissues in arm's reach, and a TV/VCR combo ahead of me.  On the table is a statue of two parents holding a baby.  And there is a basket in the corner that has a blanket haphazardly thrown over it, as if covering what's inside from the casual observer.  

I think...  

I think I'm in the room where guys go to...

You know...

Deposit their genetic materials!  

It's all fun and games until there's sperm involved.


HAHAHAHAHAHAHAHA!!!

Okay, back to business...waiting for the next hour to pass by.


8:30AM


I need a nap.  And I'm not sure if it's the sugar or the fact that it's 8:30AM and I'm merely 100 yards from Starbucks.  Matt's pretty excited to be here, though.  No kick-count app needed...he's up and ready for action.


Ally McBeal is so old, her baby is pixelated.


9:00AM

Always a glutton for punishment, I'm about to hunt down a nurse to do my next blood draw.  Shouldn't they be here already?  Should I go out there?  Did my nurse leave and suddenly everyone is worried there's some poor guy in here trying to make a deposit by watching "Murder, She Wrote"?

I guess I'll go out there and save these poor people from their imaginations.


"What's GOING ON in there?!"


9:15 AM

Quick Draw and I met in the hallway.  She didn't forget me.  Left arm this time, since she got the right last time.  I wonder if they switch each time, or if it's just because I switched recliners.  Either way, I'm now sitting in the dark, feet up, back to my 1980s old-lady mysteries.  I've been given permission to nap, and will go for it.  I mean, geez, this is my third kid.  When else am I going to nap?


Picture the exact opposite of this.  That's my life.


10:00 AM 


Just woke up to the closing credits of MSW.  Yes, I am seriously watching that.  It's good stuff!  Jessica Fletcher vs. The KGB?  Oh yes they did!  Sure, when I was a kid, watching this at Grandma's house, it wasn't great stuff.  But when Netflix suggests you watch something, you listen dammit.  Because I've been trained to obey social media and its counterparts.  

FAAAACEBOOOOK!


10:10 AM

Quick Draw is gone.  Speedy Gonzalez is here.  Speedy came in just to introduce herself, and I guess move me to another room.  I warned her I was left here because I'm a fainter and she playfully huffed, "Oh!  You're one of those!" and hustled back out to get her gear.  Pretty awesome response given that my old OB's phlebotomist used to basically pitch a fit whenever I came in.  I guess it's pretty inconvenient to walk across the hall with one vial, one needle, one alcohol swab and one bandaid.  That takes the work of at least two legs and a hand!  She couldn't be bothered.  In fact, I believe you might know her:


Seriously.  Picture this in scrubs without the whimsy.

10:30 AM

I now realize how I've been rambling on for the last 2 1/2 hours.  I feel the need to apologize to those of you who have made it this far.  ...  C'mon!  There has to be ONE of you left!  Anyway, I'm sorry.  I didn't promise any great, hilarious post, did I?  Oh.  I did.  Well, crap.  


Truth.
10:45 AM

I realize I'm in the home stretch.  Time has flown by with the nap and the self-congratulatory re-reading of this post.  I got all distracted and didn't finish the episode of MSW, so I still don't know if the KGB dunnit.  I've got fifteen minutes, though.  

Of course, in order to spew this "information" (remember, "for science!"?) at you dear readers as soon as possible, I'm going to do a Boy Meets World style summary for you now, so I can head straight out the door as the credits roll.  

Overall, I've had a pretty good day.  The juice tastes pretty miserable, but I've drunk much worse things in a game of King's Cup back in college.  (Only jerks use Bailey's for King's Cup.)  The needles were scary, until I realized how delicate the nurses were.  Barely felt anything.  Yes, I should be used to blood draws by now, but I'm not and I don't care.  It's been a very calm, relaxing experience.  Basically one step above Dental Cleaning on the Relax-a-Mom scale, and we all know how awesome that can be.  (Seriously, any women out there without living kids, get psyched for dental cleanings.  It's the best rest you'll get for six months.)  

I'll give the experience 3 out of 4 stars, with room for improvement.  It would totally be better if they'd just leave you the hell alone and let you nap for three hours straight.  But, then, I guess, what's the point?  

Hope you've enjoyed!  Love, Annie

Tuesday, February 5, 2013

Knowledge Is Power...I Guess

Nap time today was spent in research.  The problem is, when you have a blood disorder that affects almost no one (literally), there's not a lot of lay information out there.  So I found medical journals.  

Fun.  

But I got to reading.  I wanted to learn as much as possible and then put together intelligent questions to ask my doctor.  (If I'm going to have a super-rare disorder, I may as well own it.)  With the lack of easily-understood information out there, I thought I'd share what I've learned today.

The antibodies don't directly attack Matt's red blood cells.  Instead, my blood increases the bilirubin levels in Matt's body.  That affects the kidneys and can progress to anemia.

Once you get pregnant post-sensitization, the antibody response takes 6 months to develop.  This is based on an average.  That coincides with my gestation very well, so it is not surprising that my blood tests previously came back too low to titer.  

A titer of 1:2 to 1:4 indicates a mild to moderate risk of danger to the baby.  1:8-1:16 is considered moderate to severe.  1:32 is extremely severe danger.  1:16 is what I call a "red flag" for most pregnancies.  The "red flag" is the point at which the doctors jump into high gear with your treatment.  Of course, a few factors can indicate that the "red flag" should be set at a lower titer level.  Two of these factors include having a previous sensitized pregnancy, and titers increasing at a rapid rate.  I have both of these factors, and my "red flag" has been set at 1:8.

Currently, at my 1:4 titer, the risk of Matt being adversely affected in any way is low.  There's a 90% chance nothing at all will happen to him...as long as I stay at this level.  However, we have to ensure it doesn't escalate.  From now on, I'll receive blood tests every two weeks and ultrasounds every 3-4 weeks.  The blood tests will check the titer level, and the ultrasounds will check Matt's growth.  At this level, our goal is to deliver around 37 weeks.

Of course, it is very likely that (given the previous rate of increase) my next blood test will show an increase to 1:8.  At that level, I will have an amniocentesis.  The amnio will tell us Matt's blood type (which at this point is almost certain), and his bilirubin level.  

The bilirubin level will then be charted on a Liley Chart.  This chart shows bilirubin levels in relation to gestational age.  It's divided into three zones--One being the least dangerous.  Where I fall on that chart determines our course of action.  There are multiple ways to monitor and react in this situation.

Ultrasounds are actually highly effective at determining the red blood cell count of the baby.  This is the least invasive method available.  Amniocenteses are much more dangerous because they increase cross-exposure of our bloods, which increases antibody production.  However, if Matt develops anemia, the only intrauterine response is fetal blood transfusions.  This means a needle is inserted through my abdomen into Matt's umbilical cord, and he is given a transfusion. 

So, the whole effort is then balancing Matt's bilirubin levels with his lung strength.  If I get to 1:8 or 1:16, our gestational goal is 34-36 weeks.  

Suddenly I'm exhausted.  If you have any follow-up questions that I should ask, please let me know.  I'm sure I need to know it as well!  Good night for now.  I hope no one ever again needs to find out this information.

Monday, February 4, 2013

A Bomb Drop

Today is the day I've been expecting since my first blood test of this pregnancy.  Expecting...dreading...it's all the same.  

My antibody screen came back titered.  

Oh...that means nothing to you?  Well, that's okay.  It means nothing to almost every single mother on the planet since the 1950s.  You know, because the Rhogam shot eradicated this issue.  At least, that's what everyone thinks...  and that's almost true.

Out of the 15% of the US Caucasian population that is Rh-negative, only 1.8% have a chance of becoming Rh-sensitized after getting the Rhogam.  So out of the tiny amount of pregnant women who are even Rh-negative, I've hit some kind of crazy jackpot, but out of the total number of pregnant women, the odds are impossible.  

Now wait, I know I've talked about this before.  I know it's not interesting, but something big happened, and I'm getting to the point. 

Titering means they take a blood sample and check it for antibodies.  We know they are there.  But then they dilute down the specimen one time and see if the antibodies still show up.  Up until now, they haven't passed that test.  This week, all of a sudden, they did.  And then some.  Now, not only do they stand up to that first round of dilution, but after diluting 4 times, the antibodies still show up.  

Well, what difference does all that make?  Basically, the more antibodies I have, the more likely those antibodies will team up against Matt's Rh-positive blood and shred his red blood cells.  You know, just because they're different.  *tragic laugh* That Rh-profiling would then lead to anemia...or worse. 

I explained it in this adorable story to Mike:  This whole pregnancy, there's been a crazed general, yearning to attack Matt's blood.  All of a sudden, he's gotten together a small group of zealots, hungry for war.  It's likely that the zealots will soon raise an army.  And then the battle will rage.  

So now what?  Well, I'll get blood tests all the time.  My next one is in two weeks, but we'll likely switch to once a week, since the levels escalated so quickly.  Apparently the big red flag will be if I hit 1 in 16, which would mean that the antibodies would be visible after 16 dilutions (explanation simplified a little for my own sanity...). 

So here we are.  Knowing full well what we're facing and that it could get worse at any minute.  

How do we hold on to our sanity?

God bless the women who get pregnant after a loss.  We're insane.

Saturday, February 2, 2013

Considering Going To L&D Because You're Worried?

So you're considering going into L&D because you're worried about your baby...

I know what's going on in your head.  I've been right there.

This is what COULD happen if you go in:

No one will understand. 
You'll be embarrassed.
You'll cry the whole time.
The nurses will think you're crazy.
Your husband will think you're crazy.
Norms everywhere will roll their eyes.
Some people will think you're looking for attention.
You'll second-guess yourself the whole time.
Your doctor will tell you you're over-reacting.
It will be a waste of time.
You might hear the worst news in the world.

This is what WILL happen if you go in:

You'll KNOW what's going on.


Yesterday, a dear friend told me that often when mothers are nervous about their babies, they're looking for "permission" to be worried.  "Permission" to react.  As if we need another person to tell us that we're not over-reacting and our fears are founded.  But we do NOT need permission to worry about our children.  When a toddler bumps his head, no one questions a mother who rushes him to the ER.  Why should we feel embarrassed for doing the same thing, just because our babies need better equipment to check on them?  

I refuse to wait on permission from anyone to check on the welfare of my child ever again.  Because in the end, they may think I'm crazy, and they may think I'm over-reacting.  

But I'll know what's going on with my baby.

And that's all I care about.


Friday, February 1, 2013

Panic

Okay.  That was horrible.  

Around 3:00 this afternoon it occurred to me that I hadn't been paying attention to Matt's kicks.  So I stood still, focusing my attention, and realized that while he was moving occasionally, his movements were weak and subtle.  Nothing at all like the punches and kicks I have been getting.  

So I called the nurse on call.  

Well, you get the receptionist for some after-hours service, of course.  I explained that I was getting weak fetal movement and had a history of stillbirth.  She assured me someone would call me back as soon as possible.  

So I called Mike.  

He tried to stay calm and strong for me, but you could tell we were both freaking out.  

So I called Cristina.  

An amazing friend, nurse, and also a BLM, she assured me I needed to just go to the hospital and do an NST.  For a while, I hemmed and hawed, not sure whether I should wait for confirmation from the nurse on call.

So I called her again.  

This time I got a little huffy, explained I was freaking out, currently getting NO movement, and needed someone to help me NOW.  They again took my name and info, and promised a phone call as soon as possible.

That was it.  I wasn't waiting around to find out when they would finally call.  So I took Cristina's advice and just got in the car.  I drove to the same hospital--the single place that houses my best and worst memories in life, and kept it together until I parked and got Liv unloaded.  

Then I ran into K.  

Another loss mom from our local organization, K and her husband had been speaking to a group of nurses regarding care of families post-loss.  I felt like I was outside my mind when I saw them, and probably acted pretty insane.  But they completely understood when I told them why I was there.  I half-walked away from them.  I probably was insane.  K asked after me, wanting to help, and when I started to wander off, she offered prayers.  

I half-ran to the elevators.

I got to L&D as quickly as I could, and with tears pouring down my cheeks, I started to fill out paperwork.  I didn't notice the elevator opening.  But I did notice when K stepped beside me.  I'm not sure I can explain to her how much it meant to me that she followed me in.  She knows what it's like, and knew that I needed her.  There are just no words.  In her overwhelming kindness, she offered to stay with me and keep Liv.  Thank God for her.

I finished my paperwork and the receptionist disappeared.  Still sobbing, I didn't notice who was talking to me, until she grabbed me.  Jen, Carpenter's nurse.  Standing right there in front of me, ready to help me and Matt.  She took me, Liv and K back to triage and wasted no time getting me on the monitors.  He was fine.  She told me based on the data she saw, he was one of the strongest 25-week-olds she'd ever seen.  Thank God for her.  

Jen made sure Liv was happy with stickers and popsicles.  Of course, K had her spoiled with books, fawning over Liv's favorite new shoes.  But then Jen said the magic words that washed even more calm than a healthy heartbeat..."Dr. L is here.  He's coming to see you."  

Thank God for him.

He walked me through all potential causes for me to notice diminished movement, even though Matthew was moving very well.  Then he grabbed the ultrasound wand and showed me physically that none of those possibilities were an issue.  He assured me it was probably a question of not eating or drinking enough today, and Matthew was fine.

Thank God for them.

I do not say that lightly.  Thank God for the people who were with me today.  Every step of the way, I know God was putting the right people in exactly the right places to help me through this.  I know He was watching over me today, putting me in the hands of people who are truly caring and concerned about me and my sweet boy.  I have nothing fancy to say.  There's no moral to this story.  I just felt that I needed to publicly express my thanks to Cristina, K, Jen and my doctor for all being there for me today.  Thank God for you.  



...oh.  It took two hours before I got a message from the nurse on call.  So there is a moral:  Do NOT wait for "permission" to go to the hospital if you're worried.  That is why they are there.  They understand.  Just go in.  You will not regret it.